Saturday, March 28, 2015

Never stop fighting

There are so many stories contained in one child's journey. Most of the time we talk about how far Kreed's communication has come. From the days of constant rages and behaviors to now constant talking on his device. That journey has been miraculous. But Kreed is also on another journey, that of a medically fragile child. A medically fragile child that cannot tell us in detail how he feels inside. 
Recently he's been having daily rages. Sometimes they lasted all day. It was a level of violence we have never seen. Our sweet boy was replaced with an agitated teen who wanted to destroy everything in his path.  We watched foods. We watched his sleep, his meds, everything. We asked him on his device. We tried everything. We took him back to his doctors. Nothing came up. 
Then today. There it was. Suddenly so clear in front of me. He went from taking a medication for his hyperinsulinism (his body makes too much insulin) a few times a week to then times a day because his blood sugar level destabilized. We traced his rages back to the beginning of that change. He also began to have a rash we also couldn't figure out. We stopped the medication and for the most part he had a calm afternoon.  

He went from a rageful boy who kicked in the front windshield of our car to a calm boy watching his iPad and giggling. 

I will never get over the guilt I feel when I realize it was something we were doing to cause his rages and discomfort. At the same time, it was supposed to be a medication that saved his life and kept his blood sugars in an okay range rather than the panicked range. 

So now we are back to square one. His blood sugars are dropping and he can't have that medication. These are the things that keep me up at night. The worry. The checking his levels the whole night. Not an hour goes by that our life doesn't revolve around Kreed and his health. This is the life caring for a medically fragile child. 

I don't know what to even say. Sometimes we feel so lost. Sometimes we feel so inadequate. We don't have answers. Only more questions. I can't help him. I can't cure him. I can't tell him it will all be okay and have it be okay. His whole life is a struggle and that breaks my heart into a million little pieces. I just want to make his life better. Happy. 

Most of all, I just want him to be happy. That is all. He didn't choose any of this. He didn't know he was born like this with a body that's failed him his whole life. But I will make his life matter. I will give him a good life. A happy life, for as long as he is with us. I will never stop fighting for him. 

Sunday, March 22, 2015

Friendship Needs No Words

There was a video posted online recently that broke my heart. It made me realize why there are so many stories of kids being bullied or being made fun of, or even dying- because they had parents like the woman who said to parents of disabled kids "kill it, give it away or leave it at home." I had a few choice words for this woman. Then I thought about it. With all the stories about bullying and all the stories about the horrifying things the human race can do to each other, let me bring you another side. Where friendship needs no words. This is what should be shared 6,000+ times.

Meet Kreed, who is medically fragile, has autism and uses a device to communicate. And, meet Skyler, who has Usher's Syndrome (leading cause of deaf/blindness), is deaf, losing peripheral vision, has autism and currently does not have a means to effectively communicate.
Both boys have been underestimated their whole lives. People think surely they will never be able to have any kind of friendship. They said they won't understand. They don't have compassion. They don't understand how to love. People have also never understood them- why Kreed is so loud and makes the movements he does. And Skyler has faced challenges most people couldn’t dream about and they wonder why he makes the sounds he does and doesn’t listen and seems to go from one thing to the next. They have their reasons and now finally it seems they have found commonality in each other. Just because we don’t understand, doesn’t make their connection any less. Friendship doesn’t always need words. 

Here is the photo that proves them all wrong.
Skyler was a little unsure of the hotel surroundings. So I asked Kreed if he would help. Kreed walked over, grabbed Skyler's hand and they walked in together. Skyler trusted Kreed and Kreed knew Skyler needed his help. It was amazing to watch. Two boys the world has told would never accomplish things such as friendship and love and meaningful relationships. Or that they shouldn’t go in public because they don’t act the  way everyone else does. 

While the world watches kids hurt other kids with disabilities, or where adults make fun of those that are different or use hate are two boys who are profoundly affected but have found a way to interact without needing words. They FEEL. They CARE. They LOVE.

As a special needs parent, we only hope and pray that one day our child will find their "tribe." Someone they can be themselves with. Someone who doesn't mind their quirks. Someone who is just fine with exactly who they are. Kreed doesn't care when Skyler gets as close as possible to him, or when he reaches out to touch him. Skyler has no idea how loud Kreed is and so never gives off that annoyed feeling and he has realized Kreed is different and similar to himself. So he watches Kreed, follows Kreed and in general they want to be around each other. They don't need words to convey the comfort it is to find your tribe. They just know. And it is beautiful. I've never seen anything more beautiful in my life.

So when we say these kids have #nolimits, we mean it in every possible way. From communication, to cognitive ability to friendship and love. I don't care that's its taken 17 years for Kreed to find a friend, because this friendship was worth the wait. I can't wait to see what the future holds for these two.

And I thank them both for restoring hope and love back into the human race.

Tuesday, March 10, 2015

I'm fine.

I'm fine. The words spoken by most special needs parents. 

I'm fine. 

What we really mean is we are tired, sometimes broken, sometimes sad, sometimes tired, hurt, aching, or numb. Or we might be excited, shocked, cautiously optimistic. But we say fine because so much of the time it's the safest thing to say. 

Some days with Kreed are amazing and wonderful and hearing his voice is the greatest joy of our life. Other days my muscles ache from his rages and I'm numb to my feelings but deep down inside so incredibly sad for the suffering he must feel. Like I said- I'm fine. 

Some days I wish someone would finally look at me and say you are most definitely not fine. But then I know I will still lie through my teeth. Sometimes I ask myself why? Why do we say we're fine? I think it's because the alternative is too great, the emotions are too raw and powerful, and we feel as if we would drown in those emotions if we actually felt them. 

Not everyone talks about this side. When you've spent nights and days awake for weeks or months on end and can no longer even tell the difference between day and night or even if it's a week day or a week end. When you lay next to your child at night listening to them breathe and thankful for each breath they do take because you fear when you hear them struggling for breath. Or when you watch your child pound their head into the ground because it hurts so bad, and somehow in their body, hurting their head makes it better. Or when you're holding your son and the tears roll down his face into your hand while you are holding him and keeping him safe, knowing you would do anything in the world to alleviate their suffering. 

But I'm fine. 

I have to be fine. When people ask me how do you do it, the answer is simple. Because I do. Because what other choice do I have? He's my son. He is my heart. He is my soul. When your soul is suffering, you would do anything to make it better. So I search for answers, I research, I connect with doctors and I never stop until I know he feels better. Because he's not fine. He is suffering and he is telling me. His emotions are raw, his feelings are more real than I've ever seen and his voice rings true- he can't say he's fine when he's not. I have to be there for him. I have to help him. I have to be fine for him. If I break down, it means nothing will be solved for him. I can't do that to him. 

So I'm fine. 

We do what we can, when we can for ourselves. Five minutes here. Five minutes there. Or on calm nights we get snuggy and catch up on our DVR. We rejoice in those quiet moments and save up our strength for the storms we know will come. 

The thing about the storms though- they come, they rage, they blow us around and knock us against walls...and then the calm comes. We can breathe. We take time. We heal. We love. We strengthen ourselves for the next storm. 

Not everyone's experience is like ours, but I can tell you without a doubt, every special needs parent you meet has weathered storms you'll never know about, and lived to tell you another day that they are fine. 

Behind every fine is a story, a past, a strong heart and soul who has seen more and experienced more than most people will ever realize. 

Because we are fine.